When given the opportunity to dispense certain products, services, privileges, or other benefits that can be spread around, many of us feel an impulse to do the most good possible for the most people possible. This seems only natural, maybe even right, until you consider the adverse effects this approach can impose on people who are not among “the most”—people with rare diseases, for example. Acting on this impulse in biomedical research and health care services, then, would result in allocating resources to diseases that affect much larger numbers of people in preference to rare diseases. read more >

In my previous blog post, I referred to the borders that people with rare diseases may confront when their illnesses have led them to another place, even if that other place is not literal but figurative. Though these borders may not have substance, they still function as barriers both to care and to opportunities to participate in the ordinary activities that life offers. read more >